Prepared by Jonathan Lazar and Gregg Vanderheiden.

 

People who have or are experiencing disabilities have widely varying preferences about how they are referred to. Some don’t care. Some care a lot.  Some don’t express a preference but it still affects them.

As a result, it is important to think about and develop good habits on, how we refer to each other.   If people refer to you as an “employee from the southern US” or a “southern employee” it feels different. The latter seems to categorize you as “that type” of person –  rather than being a characteristic of you. For example, if someone introduced or referred to you as a  “male engineer” or “female engineer,”  while true, it seems to label you or categorize you, rather than passing information.

So when referring to someone who has a disability it is better to say “person with xxx”  rather than  “xxxx person”.  This is called “people first” language.  There are a couple of exceptions as noted below:

Examples of what is NOT people first language (and best to completely avoid)

• “disabled people”
• “special needs person”
• “autistic child”

Other words that have gathered negative connotations in the community/field and should NOT be used even in “people first” form

• crippled
• retarded (or mental retardation )
• senile (even though it may be a medical term)
• handicapped (although some government agencies, such as the Library for the Blind and Physically Handicapped, still use the term because it is in the statutes that create them)
• suffering from or    victim of    (or similar)
• (And often, ‘impaired”)

People first language

• Put person, child, engineer, whatever, first, with the fact that they have a disability of some type afterward as a notation
• Examples:
  • • child with cerebral palsy
    • person with autism
    • user with a disability
    • people with dementia
    • a person with a spinal cord injury
    • person with Autism
• If you need to specify a limitation, you should do it if possible in a way that it focuses on what technology they use, rather than their limitation.
  • put technology first
  • For instance, never say, “wheelchair bound”
    • –instead say, “a wheelchair user” or “a person who uses a wheelchair.”

Cognitive, language, and learning disabilities

• Disabilities are typically divided into perceptual (or sensory), motor, and cognitive
• The problem is that people think of cognitive as meaning decreased intellectual ability – rather than the full range of cognitive, language, and learning disabilities
• For accuracy – it is best to refer to “cognitive” as cognitive, language, and learning disabilities if you mean all of these
• If you mean intellectual disability the term now preferred is “intellectual disability”
• Another term increasingly being used is neurodiversity, defined as “the idea that neurological differences are to be recognized and respected as any other human variation. These differences can include those labeled with Dyspraxia, Dyslexia, Attention Deficit Hyperactivity Disorder, Dyscalculia, Autistic Spectrum, Tourette Syndrome, and others.”

Health

• Although
  • people with disabilities do get sick –
    • and sickness can lead to temporary and permanent disabilities,
    • and we often use the healthcare system (doctors, OTs) to prescribe, provide or pay for interventions for people with disabilities,
  • a disability is not an illness.
• You are not sick if you are:
  • Short (or very short)
  • Have short arms
  • Have a spinal cord injury
  • Are blind
  • Are deaf
  • Have Cerebral Palsy
    • CP is damage to your neural system that occurs at birth – often due to lack of oxygen, not a disease.
    • Just like permanent damage to your arm from a machine accident is not a disease though it would hamper you in some ways/activities.

Normal

• Don’t refer to people with disabilities (PWD) as non-normal, abnormal,
• And don’t contrast them against people who you call “normal”
  • describe the skills in comparison (e.g. Blind users vs. visual users, or Deaf users vs. hearing users).
• Sometimes you may want to refer the general population
  • This is tricky since people with disabilities ARE part (~ 20% or more of) the general population
    • Note that there is probably some characteristic of you that less than 20% of the population have.  Maybe even your IQ.  Are you abnormal?  Well – yes.  We all vary from the norm in some way.  Do we want to be referred to as abnormal?  Well, there are probably better terms we would prefer in most situations.
• Some terms you might consider:
  • Mainstream – if you mean everyone (including people with disabilities).   “It is a mainstream product”   vs “a product designed for some particular population (of any type)
  • Typical – if you mean people representing the majority of users of a product or service

Exceptions  (and exceptions to the exceptions)

• While most populations prefer the people first language, there are two common exceptions: (some) people who are Blind and some who are Deaf. They may be OK with talking about  Blind or Deaf People or even The Blind or  The Deaf.
• Blindness
  • Many people who are blind are OK with non-people first language. And NFB is an organization that wants people to focus on what is important rather than labels.  (And this is actually a good lesson for all disabilities.)
    • To paraphrase the former president of the National Federation of the Blind, Dr. Marc Maurer: “I don’t care if you call me a Blind person or a person who is blind or a person with visual impairment. I want you to call me employed. Because if you can’t call me employed, then the other names are of little difference.”
  • Still, you will find people who have visual impairments who don’t want to be a “blind engineer” , but would rather be an “engineer” or “programmer”  or “sales agent”  (or  any other profession) “who is blind”  (or just don’t mention the blindness at all unless there is a good reason for mentioning their blindness — such as being sure that they can use something they need).
• Deafness
  • Within the Deaf and Hard of Hearing community, there is a unique dimension among those who use sign language as their primary language.
  • There are those who view sign-language-using deaf people as a Culture. For them being Deaf (with a capital D) is viewed the same as being French (and speaking French).  They do not consider themselves as having a disability (“we’re just like the French…we use a different language!”).
  • Here again though — they would prefer to be “engineers who are Deaf” rather than  Deaf engineers.  (And French people would rather be engineers who are French rather than French Engineers – as if that is a different kind of engineer).
• Hearing
  • The use of the term Hearing Impairment is fairly common to refer to people with any type of impaired hearing.
  • Preferred terms however are:
    • ______ who are hard-of-hearing
    • _______who are deaf   (with or without the capital D)

Personal Preference

• Sometimes someone will say — just call me xxx
• But even then, think twice, since you might offend others around them — right then, or later when they did not hear the other person asking you to do so
• Remember that it is ok for people to call themselves something that it is not ok for others to call them.  Ethnic names are one big example.  Disability ’nicknames’ are another

Country and Cultural

• Note that there are country/cultural differences, as well
  • So in some countries, the term “disabled person” is considered OK, even though it is now considered insulting in the USA
• Also, the coverage of a term might be different
  • For instance, in the USA, “Blind” is a broad term covering anyone with any level of vision loss
  • However, in many other countries, the term “Blind” is reserved only for those with no residual vision, and “visual impairment” is used for people with other levels of vision loss
• Note that in other countries, there are other sign languages (not ASL) used by Deaf individuals
• Note also the meanings for Learning Disability and Cognitive disability are very different bordering on reversal
  • One way to avoid this is to use the phrase cognitive, language, and learning disabilities rather than anyone term unless you are referring to a specific subpopulation of that – in which case you should describe it as well

When in doubt, always ask what the most respectful term to use might be.